Irish family’s long wait for cure to fatal brain disease

Saoirse (5), Liam and the rest of the Heffernan family in Castlemain, County Kerry, are having a tense time waiting to hear if they have been admitted to a trial at Cornell Medical Center, New York which could save both the children’s lives.

Last month Saoirse underwent a battery of tests in New York to see if she could be accepted on to the trial. Saoirse and her little brother, Liam, suffer from Late Infantile Batten Disease. The rare and fatal neurodegenetive disorder means that the two children will not see their tenth birthdays.

The trial surgery taking place at Weill Cornell Medical Centre in New York this year only has three places. It is hoped that Saoirse will be part of the trial. If the procedure works then her little brother might be saved also. The trial only has 16 places.

Saoirse’s father, Tony said “We had a good response to the tests. The doctors are in contact with us around twice a week so we're taking that as a positive.

“Physically she was very tired after it, particularly being under the general anesthetic for so long. Since she got home though, she has been in very good form.

“Like every other parent in this situation, we are wishing our child is picked,” he added.

It is estimated that 1,000 children worldwide suffer from the disease which causes the children to have multiple seizures everyday damaging their neurological development.

Unfortunately it is up to the Heffernan family to raise the money for the procedure which will cost $500,000 for Saoirse to take part. If Liam is then accepted the price will double.

“It's not a cheap process by any means but we have to keep going and, please God, our child gets on it,” Tony said.

So far the family has managed to raise over $392,000 of their $982,000 target. The family has been overwhelmed by people’s generosity so far.

“The Celtic Tiger is gone, the greed is gone and good old human nature is back…People have been fantastic; it's overwhelming."
Anyone wishing to make a donation can get further details on www.beeforbattens.org.